Will Your End-of-Life Plans Be Honored?
July 24, 2001 -- Do you have any idea what is best, medically, for your spouse? Your parent? Have you talked about what kind of life-sustaining treatment they would or wouldn't want? Or about medical conditions that could leave them incapacitated, and unable to make treatment choices?
For most people the answers to those questions is probably a resounding no.
But even when people do have a serious discussion about end-of-life decisions, many survivors will still make treatment decisions based on what they would want rather than what their loved one said they wanted. That's because part of the decision-making is a process called projection, where we make decisions based on what we think is best for ourselves or for others, says William Smucker, MD, a researcher who studies end-of-life decision-making.
In two studies reported in Health Psychology, Smucker and other researchers attempted to find out what surrogate decision-makers would do in hypothetical cases in which the patient was incapacitated. In both cases the research suggested that projection regularly influences decisions, says researcher Angela Fagerlin, PhD, of the University of Michigan and the Ann Arbor Veterans Affairs Health Services.
The surrogates' decisions agreed with the patients' preferences only 60% of the time, says Fagerlin -- even though the surrogates and patients both sat through detailed discussions of the various hypothetical situations and the patients clearly stated their preferences.
Director of the family medicine residency program at Summa Health System in Akron, Ohio, and a co-author of the studies, Smucker tells WebMD he brought together Fagerlin and other researchers several years ago with the purpose of studying advance directives and the ability of surrogates to make decisions based on patients' wishes. But now, he says, he isn't sure that accuracy is the real issue.
What the new research demonstrates, he says, is that projection is an essential element of decision-making, and it is probably "impossible to tell people to turn off that part of the brain."
Furthermore, says Fagerlin, many experts in the field of end-of-life care believe that in the absence of a written directive, a surrogate's decision based on the surrogate's own treatment preferences is the most helpful information available.
While the studies are interesting, says Carla S. Alexander, MD, medical director of the National Hospice and Palliative Care Organization in Washington, it may be impossible to design a study that reflects real-life events. For example, none of the patients were dying or seriously ill, says Alexander. Real-life decision-making is much more complex.
Rather than trying to make new and better advance directives, Alexander says the real issue in end-of-life care is communication and it is often at least a three-way street: patient, family, and physician.
A good illustration of the power of communication is Chicago public relations specialist Stephanie Kerch, who tells WebMD she is grateful she had the time to become a really informed surrogate for her mother.
Her mother was diagnosed with lung cancer in 1998 and died in May 2001. During the months between diagnosis and death, Kerch and her mother had time to have many long conversations about her mother's wishes. "I carried a book around with me and made notes about all those conversations," she says.
Her mother died "after a rough final two weeks." Kerch says. "If I had to guess what she wanted me to do during those terrible days, I would never have been sure I was doing the right things."